Patient Comments: Henoch-Schonlein Purpura - Experience

Please describe your experience with henoch-schonlein purpura.

Comment from: kristi1980, 7-12 Male (Caregiver) Published: December 16

My son is 9 years old, he was diagnosed with HSP (Henoch-Schonlein purpura) when he was 6. The children's hospital had said that my son had one of the worst cases they had even seen. The only thing that helped his stomach pain was morphine. This all started with a swollen ankle; the very next day the rashes appeared, then the severe abdominal pain. We were in and out of hospital for a month and was told when the rashes went away he would more than likely never get it again. Wrong! This has affected his kidneys. The very next year he was hospitalized again because a sinus infection started the disease up. He is 9 now and we are still battling through it. He can't get rid of any infection that he gets and I'm trying to find a cure for this baby. It's not fair to him and I would love to find a doctor that can help, so my next step is going to the blood doctor and try some new medication they have now.

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Comment from: Bob, 55-64 Male (Patient) Published: April 21

I was approximately 8 years when I contracted Henoch-Schonlein purpura, I was seen and diagnosed in 1959. I experienced severe stomachaches, rashes, and joint pain. I also had a loss of appetite. Thank goodness for codeine. I recovered after about 6 weeks. No ill effects since.

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Comment from: Talei, 13-18 Female (Caregiver) Published: October 29

Henoch-Schonlein purpura (HSP) is awful and I reckon it is about 2 years that my daughter will have had HSP! She got it at 11 and is now 13, and protein is high and the rash is just as bad as the first day she got it.

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Comment from: sandra, 3-6 Female (Caregiver) Published: November 06

I am a mother of a 5 year old girl who on the 2nd October 2013 was diagnosed with this nasty horrible HSP (Henoch-Schonlein purpura). I cannot write into words how upset I am seeing my daughter roll around and cry in agony with stomach pains. The rash hasn't bothered her at all, just these nasty stomach cramps. She is losing protein and blood in her urine, she has lost loads of weight and keeps asking me how much longer she is going to feel like this. I wish I had an answer for her. she has had so many blood tests, been in hospital a week with high blood pressure and on a drip; she still has high blood pressure and stomach pains to this day 2nd November. I keep upsetting myself as I want her back to her normal self.

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Comment from: Christian, 19-24 Male (Patient) Published: October 31

I was diagnosed with this when I was young, about 10 years old or so. I am now 23 and anytime I have a cold or virus I seem to get the very mild rash, not bumps just purple "spots" as my wife calls it on my feet and legs. I have been encouraged to have my blood drawn occasionally to check my kidneys. There is no apparent damage, I'm just wondering what others do.

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Comment from: GG, 3-6 Female (Caregiver) Published: May 17

My granddaughter is entering her 10th week of this terrible affliction called henoch-schonlein purpura. She is 6 years old and has constant stomachaches. Each time she has one good day, the cycle starts again. She has swollen and painful joints, severe stomach pain, and then a rash, which gets larger and covers more and more of her body, even on her face, ears, and in her mouth. There seems to be no end to her pain. The doctors do nothing for her and just suggest waiting it out. I give her Tylenol and Motrin for pain, but worry about even that damaging her stomach. I feel so helpless. She can't eat, and lost 8 pounds the first month. We took her into emergency twice, and the second time, the doctor didn't seem to know what to do and sent us home. When the rash gets so large, I worry about possible internal bleeding. Has anyone found a method of relief for this monster?

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Comment from: Boulder Mom, 7-12 Male (Caregiver) Published: September 25

My son was diagnosed with henoch-schonlein purpura (HSP) when he was five. He woke up one morning and told me his ankle was hurting and that he couldn't walk. There was a tiny pinkish spot in the ankle area. I asked him to recall what he had done the day before thinking that somehow it was just sore from some activity. He said he jumped out of a tree and may have bumped it. I carried him to Urgent Care to get a foot x-ray. As it turned out, there were no broken foot bones. As we waited, the small spot grew from a dime size to a quarter size. The doctor then ran a series of blood tests which came back showing that there was some type of non-specific inflammation in my son's body. He suspected that my son was having an arthritic reaction to the cold and stomach virus he had had the week before. He let us go home but called the Children's ER and informed them that we might show up if things worsened. Between 6 p.m. and 10 p.m., the rash worsened. The red dots had grown together and were all over his ankles. His feet were swollen and very itchy. It was like the blood began to pool under his skin. He still couldn't walk. He also had areas with red dots on his torso, thighs, arms, and scalp. Basically all of his joints were aching and he had a horrible headache. Well, at about 10 p.m. I was picking him up and he screamed out in pain. I raised his shirt to find that his back was swollen the length of his spine. I literally freaked out and rushed him to the ER. By midnight, the ER docs diagnosed him with HSP. I think the Urgent Care doc would have diagnosed the HSP had the rash been more prominent earlier. My son stayed the night at the hospital. He couldn't walk for almost 2 weeks. He had to do weekly and then monthly urine tests to monitor whether the HSP was in his kidneys, but nothing ever showed up. He never had to take the Prednisone, just ibuprofen. My son is now 8 and I can still remember almost every detail of that frightening day. He has not had HSP again but every cold he gets worries me and I can assure you that I try to make sure he is always well rested (at least 10 hours of sleep a night) so that his immune system can better fight off viruses.

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